What Do You All Think?

[cjblack]

I am brand new to this board and this is my very first post so I am going to bore you all with ALL the details.

William will be 18 months old on Jan. 2. At 10 months he started having daily diarrhea. Various colors, various consistancies,etc... My first thought was a bug so I took him to the ped. No bug try foods to firm him up (i.e. bananas, rice, applesauce, toast). I tried that for a while with no change. We then went to Disney World (my almost 5 yr old was granted a Make A Wish trip). Things only got worse while we were there. Upon coming home I made an appt. to have William allergy tested. Allergy testing showed positive reactions to apples and bananas. I pulled those from his diet, with no change. I then tried pulling dairy from his diet (big brother is HIGHLY dairy allergic). Still no change, so we called a ped GI. It was late October before we got in. This guy was a flop so I found anew doc. who got him in within 2 weeks. We have seen her several times and William is being scoped on Jan. 4!

Now he has had poor weight gain (he is barely 20 lbs). His poops have ranged from mush to water ALL smelling AWFUL. Color varies. He great terrible diaper rash that takes, what seems like forever, to clear up. The past 2 wks have been particularly bad. 4-8 runny diarrhea diapers a day. Rash so bad we had to see the ped (GI was out for Christmas) for a Rx cream. We HAVE NOT pulled gluten because of the upcoming scope.

His blood work was normal, but since he is under 2, I have read that the blood work can be wrong...

For the record he can not eat tomatos or chocolate either. Both produce GI reactions and a rash.

[celiacgirls]

Welcome! You will find a lot of information here.

I suggest you try him on the gluten free diet after the scope regardless of the results. It's possible for the biopsy to be negative but still have at least a gluten intolerance.

My daughter was never scoped but did have numerous negative blood tests. She has a positive dietary response to gluten.

[Juliet]

We were told by our ped G.I. and another ped G.I. Dr. Michele Pietzak (she's one of the pediatric Celiac experts on the west coast [possibly THE expert on the west coast Open Original Shared Link]) that being gluten free even for a little while can mess up the blood tests, but the intestine will show damage for six months to a year even with a completely gluten free diet. For the blood tests to be at their most accurate, Dr. Pietzak said to have the equivalent of at least two pieces of wheat bread daily for 2 months before taking it, but this was not as necessary for the biopsy. The moment we were told our son possibly had Celiac Disease (tTG was high - at 153), we put him on a gluten free diet. He was so sick at the time that he was hospitalized, so honestly we didn't care if it messed up the results or not - if he was going to get better quicker by putting him on this diet we were going to do it. And our ped G.I. didn't have a problem with us going gluten free before the biopsy either. Three and a half weeks later the biopsy was completed and it turned out positive, but we saw positive results from the diet within a week and a half. If it's not too long from now that the biopsy is performed, you may just want to put him on a gluten free diet anyway. It's a tough call, though. I think it depends on how much you really need an official diagnosis or not. I'm of the opinion that if it works, it doesn't really matter what it is or called. But my sister, who's studying to be a nurse, has to know exactly what is going on, so in the end it's what you think is best.

[cjblack]

If the scope doesn't show anything then our next step is a gluten free diet. We don't have a great health food store around here so I will have to learn how to do alot of things from scratch.

Thankfully, William seems to feel pretty good, most of the time. For that I feel very lucky. I am anxious to know what is going on and learn how to fix it.

[GFBetsy]

Don't worry about "having" to make things from scratch . . . gluten free things made from scratch tend to taste WAY better than the pre-made things anyway.

Congrats on the up-coming scope date . . . let us know how things turn out.

[cjblack]

Don't worry about "having" to make things from scratch . . . gluten free things made from scratch tend to taste WAY better than the pre-made things anyway.

Congrats on the up-coming scope date . . . let us know how things turn out.

Will do! We see the GI this afternoon for a pre scope check up.

[cjblack]

Here is the rundown from the doctor:

William is having an upper scope done on Thursday morning. The doctor is taking multiple biopsies all the way down. She is slightly questioning some of his lab work from back in September (done by another doctor). Particularly his Lymphs and Segs. as she says that by now his Segs should be the higher number. No word on if she wants to rerun the bloodwork. She is also slightly questioning William's Total IgA on his Celiac panel. Doctor says normal is 80-220 mg/dL and William's was 75. Not a big deal but it gives her pause.

Many of the tests run on the biopsies will be done locally, however the lactose test is done in New York. The local stuff we should have back in 2-4 days. The stuff going to New York could be same day or many days later. Doctor says they are not predictable. She has promised to call the minute she gets results so I am hopeing I will not have to wait all weekend.

There's the scoop on the scope.

[cjblack]

William had his scope this morning and everything, visually, is perfect. Now we are just waiting on biopsy results. They will be in sometime next week.

[GFmum]

Good luck with the results. I hope you get a solution to those aweful symptoms. Keep us updated!